Thursday, October 29, 2009

Serial casting--part 3

Serial casting, we are back.
Trish and Julie (Zoé's Physical Therapists) decided that instead of putting Zoé's foot at 90 degree (Impossible, at this stage) they would work on the heel and then work on the forefoot in our future sessions.
The casting went relatively well with Zoé on her belly, watching her DVD of sing-along-songs and playing with Barbie's phone.
We drove back from San Ramon, a town 30 minutes away from home (with no traffic, closer to 45 minutes in rush hour traffic).
We wedged a box in the back seat so that Zoé's foot could be in an upright position. When I carry her, I have to hold the foot as well, for if it dangles it puts too much pressure on the heel.
I place the cast on my lap when I feed her, there's always a technique one has to try...
The night was uneventful, despite Zoé's crying a few times for she kept banging her cast in the bed railing.
I had to place her back in the right position in the middle of the night a couple of times.
I am soooo happy that we've started casting again, for I am now really focused on Zoé's walking as our next goal.

Yet, Zoé is now able to communicate quite well, and she keeps pointing at her cast saying: "enlever" (Take off) I keep telling her how wonderful it looks, how I wish I could have one too...oh little white lies...never hurt anyone, right?!

After having croup (Laryngitis) last week, she now has a double ear infection and I am sick with some sort of cold( cough, sore throat, canker sores), I think I've been in denial of how much we've both been through. Constantly rushing here and there, leaving the house every morning at 8h45 am...I really enjoyed staying in my PJ's this morning till 9h30, what a treat!!!

We are getting ready for Halloween as there is a great parade on Piedmont Avenue (the main strip). we'll take Zoé in her cat costume; Le Chat!!! her favorite animal, and the first word she ever pronounced!

She is also obsessed with spiders, she simply adores them. We've decorated the house with a few tarantulas, a crow, a wild black cat and some jack'O Lantern stickers and light bulbs on the window panes.

We usually go for a stroll everyday so that we can see the few haunted houses in our neighborhood.

And we decorated our own mini pumpkin!
More to come regarding Halloween, till then we wish you a happy Trick or Treat jamboree and lots of candy ;-)

Monday, October 26, 2009


Wow, fun weekend we just had. Guess who came to our house for lunch?? Kayla, our inspirational guest and her parents, Lisa and Jeff.
We went to our Myotonic Dystrophy support group, which takes place every quarterly and Lisa, Jeff and kayla came down from Sacramento for the occasion.

The support group was very informational as the guest speaker was a cardiologist who was invited to answer all our questions regarding MMD and how the disease impacts the heart. He was thorough, yet concise and we came out of the meeting feeling more cognizant of what might or might not be present for us in the future.

After the meeting, which lasts two hours, we invited Kayla and her parents to come to our house before heading north. We bought some lunch and scrumptious cakes and got to share some quality time discussing our daily routines, therapies but also laughing about life and how much our respective child has done and how Kayla, most of all is beating the odds every day.
She signed the alphabet for us and left saying Zoé's name over and over again. Needless to say, Zoé was in awe! Kayla is her mentor!

I felt so honored to share this impromptu luncheon with Kayla and her family, as they are true inspiration for us. Inspirational regarding what lies ahead. Inspirational about being upbeat and full of energy.
Here are some pictures of this spur-of-the moment lunch and wonderful day.

PS: you can learn more about Kayla if you wish, by visiting her blog on "Cure for kayla".

Saturday, October 24, 2009

Fun Visitor from NYC

Odile left today and I must admit it was a wonderful visit; a much needed one. I think it is so good for me to see things from someone else's perspective, and a dear friend at that, and Odile thought Zoé looked great! I know she looks great and is doing tremendously well, it just helps to hear it from someone else.

Unfortunately, Zoé got croup this week, so we had to postpone a couple therapies , daycare and a sightseeing trip into San Francisco with Odile.

Actually, it might have a been a blessing in disguise, as I got to stay in my pajamas for an entire morning, lounging about, playing with Zoé, reading books and drawing.
We hadn't done that in such a long time, that I was somewhat "thankful" for this little bout of croup.
Zoé is doing much better now and I think she also needed this rest.

Therapy will start again on Monday and we have a busy week ahead, with the new episode of casting on the foot. Hope all goes well this time, for David leaves on Monday for a 5-day business trip, and it will be hard coping with Zoé's discomfort.

Zoé is doing great, and I want to make sure all of you readers out there know it. I have "lost" (though I know in my heart that we are still close) touch with some dear friends of mine since I started the blog, and I am afraid these friends think that Zoé is so challenged that maybe they don't know how to relate to what we are going through.

I want to make it clear that all is well, and eventhough sometimes my posts are a bit cheerless, you must know that all is good here.

I look at Zoé with so much faith and confidence that you mustn't fear to reach out.
I know it is hard when you are faced to the unknown, to the community of special needs, but we are proud members of it!

I recently read about Katherine Heigl, the Grey's Anatomy actress, (I have actually never watched an episode of this series) and her adventure with adoption. She just adopted what the magazine entitled "a special needs girl from China".
In her letter to the editor, a mother commented on that title, saying that it was incorrect to call it a "special needs kid", but that it was better to say" a child with special needs". Indeed, Down Syndrome does not qualify her son, she said.
I would like to emphasize that as well. MMD does not identify Zoé, it doesn't define who she is. It just adds depth to the wonderful little girl I love and cherish.

I hope this finds you well.
A big thank you to Catherine and Peter for your never ending positive comments. They bring the blog to life and I am proud that you enjoy reading it!

Wednesday, October 21, 2009

Fun Stuff with Daddy

Well, I haven't written in a while and I don't have much time as I hear Zoé wiggling in her crib.

A lot of things have happened recently and I am thrilled to share our latest news.

Big big step: Zoé passed her in-water evaluation and will be a SNAP (Special Needs Aquatic Program) member in January 2010 for the new semester.

Her friend Drake also passed and so she already knows a poolmate!

I took her in the water: heated at 98 F!!! A real treat to walk in the shallow end. Zoé had to catch little floaty things with a net, she had to push a ball to the instructor, "swim" from one side to the other kicking her legs and drenching me as she went along. We danced in a circle with two other little girls and their mom singing "Ring around the Rosie" as we all fell down in the water.

David came, and it was fun to have Daddy in the audience.

David also came to Kindergym in the morning where Zoé had fun driving her mini coupé and tumbling under a parachute, listening to songs and splashing water and molding playdo. It was a real treat to have Daddy with us. We can only take part in family activities on the wekend, and for Zoé it is true delight to enjoy both Mom and Dad.

Our family treat is that Aunt Odile is here from NYC and we've been having fun hanging out and catching up. Zoé adopted "Ogui" right away!

On a different note, Zoé has "croup", she coughs up a storm and sounds like a barking seal on the San Francisco Pier. Hopefully she'll recover quickly.

Gotta go...

See you soon on the blog!

Wednesday, October 14, 2009

Sisi and Adi, my BFFs

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Mommy chose this one !

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Or do you prefer this hat???

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Like my hat???


Tomorrow is weekly playdate with the twins, Sisi and Adi, for Sydney and Adair. Can't wait to dress up and play kitchen...
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Rude Awakening

Rude awakening. I know this is a blog that has more to do with Zoé's daily life in California, but I also like to think of it as a sphere where I can either cheer for good things happening, or use it for the days when the spirals go haywire.

Today was one of those days.

Zoé was in daycare, I went to my ceramics class, worked hard at the wheel, and managed to produce a bowl, after an hour and a half, finished class with another bowl, hand thrown.

After that, had to deal with calls: checking on the Unified School District to see whether Zoé, considered low incidence (Physically challenged) would benefit from any low incidence funding. I was told that because AFO's and Serial casting were deemed medically necessary, she wouldn't be covered. Low incidence kids are allowed special equipment such as a desk, a chair in their classroom, once they turn three and go to preschool. Anyway, long story short, after that I ran a couple errands and went to the post office to mail some packages.

That's where I had a revelation, an epiphany or was it a rude awakening?
I wedged a package in a tight envelop and couldn't retrieve it, due to my hand weakness, creeping yet omnipresent symptom of MMD.

I asked the clerk to get it out for me as I had a question to ask her.
There she went on a ranting rave about I having an attitude, and a problem, that something was surely wrong in my life, etc, etc. I will spare you the details, but after listening to her litany of grievances about my attitude and what she thought was arrogance, etc, I burst into tears. I wanted to bury myself alive.

I felt so powerless and vulnerable for she had just pointed at the very weakness of my condition, I guess, it wasn't just my Achilles'Heel she hurt, but the very essence of what is going on in my life.

How I fear what is happening, how I feel that from today on I will have to tell people that I can't do this or that.
I told her at the end, that it was because of a neuromuscular disease, I had asked for her help, because I simply couldn't perform the task at hand, pun intended!

She then told me that she couldn't read my mind, etc, and that I should learn a lesson from what happened today....blablabla.

I now know what it feels like to have an impairment, whatever kind it is. You have to deal with the harsh world out there, where people won't always care or understand you.

All I know, is that I never want this to happen to anyone. I guess after crying and letting go of the much needed tears, I felt that even though I had lost control, I had also learnt something invaluable.

I feel empowered, because I have learnt a valuable lesson, indeed. I will never let anyone hurt me in such a way. I am now armed and prepared to fight back ot to let it slide, I like to think of Teflon, and letting what ever bugs me, slide by.

I will make sure Zoé is prepared as well, and as a matter of fact, she has started to show more of her feisty personality, which I praise. For all this time, she was more subdued and showed her vulnerability, but now she is fighting for that toy she so covets. More power to her. "Go girl" is what I want to cheer.

Well,once again, thank you for letting me rant and rave.

On a VERY positive note,however, Zoé is going for an in-water evaluation, for aquatic therapy. We will see how she does in the water next Friday, and if she is good to go, she will start the program in January.

Serial casting is postponed for another 2 weeks for Trish, Zoé's PT is going out of town. Will fill you in when we get the meantime, hope you are enjoying the fall and are getting ready for All Hallows' Eve or Day of the Dead wherever you are.

Zoé was a pumpkin last year, this year, the pumpkin will change itself into a cat on the twelve strokes of midnight!! Beware...

Monday, October 12, 2009

Serial Casting Episode 3--to be continued


We are off to have the foot serial casted later today after Zoé's nap. I need to get everything organized: snacks, toys, DVD of favorite songs, sippy cup and comfy clothes for Zoé to feel fully prepared. After a 10 day-hiatus we are back in full force and I hope that this time we can leave it on and see how well it can correct Zoé's foot.
She has so much desire, she is craving the walk she will soon be able to accomplish on her own. It is unbelievable how much she wants to be up on her own two feet and cruise around.

This morning we went to our occupational therapy session and Kitty told me that Zoé is a very tactile girl, she loves to retrieve little toys hidden in huge vats full of dried beans, she just loves to dig in and out, throw beans everywhere, I guess she's ready for my next Chili Con Carne...She also learned how to eat with a toothpick, working on fine motor skills and self feeding,looked like a cocktail party without the cocktails. Very cute! She sipped on her own mocktail!

This w-e Zoé excelled at her favorite pastime: up and down the slide on her own, climbing the big steps, slipping with the new AFO (Ankle Foot Orthotics), but to no avail would she be stopped.
She probably went up and down 40 times. She also loved pushing her shopping cart full of fruits and veggies, bouncing on exercise balls and playing around.
We did all this at a play cafe near our home, where once the admission has been payed she gets to fully enjoy herself and I get to sip on a latte, while I keep an eye on our little climber. I'll have to bring my camera next time.

In terms of communication Zoé can now say:
I did it!!!
teur ta dede : pleure pas bebe (Don't cry baby, when she plays with her doll)
she sings: head shoulder knees and toes, which sounds more like: he shol nees to
and Ring Around the Rosie: we all fall daoun!!!
I lov youuuu is also one of her favorites.
She gets the last word of the blog!

Wednesday, October 7, 2009

Shaping our World

Zoé is at day care and I am covered in clay! I am really enjoying my new ceramics class and today I tried myself at the wheel. Much harder technique, but I loved the feel of wet clay on my hands.

Today was the first day I actually had to tell someone about my affliction. Indeed, clay is hard for me to mold and I had to ask the teacher whether the wheel would be easier on my hands than the hand clay technique.

I tend to put in the back of my mind that just like Zoé, I also have MMD. When I came home I had the Quest magazine (MDA Publication) in my mailbox, and again, a reminder of this disease.

I get somewhat down when I read it, I think I prefer to think that we can beat the odds, that science will perform a miracle, that we can conquer and achieve all our goals with tenacity and love.

I look at Zoé like my mentor.
She doesn't know what she has, she doesn't know the difference from her friends that walk. She finds ways in which she can do what she feels like, climbing, cruising and going up and down slides.

Just like clay can be molded, Zoé has shaped her own world with what she has, her ability to embrace all that surrounds her even with her physical limitations.
I like this analogy.
Even if you are limited, let's say at 50%, you still have 50% left. It's like looking at the glass half full. Full of possibilities. Our world is just different. It's rich in its complexity.

I have been thinking about applying for a handicap blue placard for my car.
Not for myself, but for Zoé.
I think I have been in denial, but I now see how it could help her.
Zoé is so motivated to walk, and loves any 'moving' toy, pushcart, walker, that if we had such a card in our car, I could pull up right in front of the door at PIP and Zoé could then "walk" in with her walker.
Why limit her to the house, and to a little stroll to the playground?
Why not open her entire world and fulfill her desire to walk.

Yesterday, we went to physical therapy and Zoé didn't want to stop after our 30 minute session, the only time alloted to her by CCS (California Children Services).
She said: "Outside" loud and clear. I couldn't believe it. I never taught her that word. I guess David did, and she was asking to walk, to conquer the outside world, to triumph against the physical limitations set before her and open the boundaries, so that she could see what it's like to walk outside, to go wherever you wish to go.

I started filling the form for the blue disabled person placard. I still need to submit it to a doctor.
But in "disabled" I see "able" and I know that, just like Zoé, I will be able to mold that clay into a mug or a vase, and she'll be able to walk to school and to daycare or the park.

It makes me think of one of the most powerful analogies in the Bible regarding our transformation, which is the analogy of the potter and the clay. The Bible says that God is the Potter and we are the clay. It is up to God to mold, transform us as we journey through this earthly life.
Our journey will be slightly different: I will hold Zoé's hand as we cross thorny and tricky passages, and she will hold Elmo's.

Monday, October 5, 2009


Aloha to all.

We just spent a wonderful weekend and it will probably take us a week to recover.
The best of all was the surprise visit of Uncle Eman who came from France for an evening. He was on business in LA and flew up for 17 hours in our company. We had a fantastic surprise party with Mel, Julie, Terah and Leslie: BBQ fish Mexican style, tacos and all.

Zoé was thrilled to have a full house. The next day she had pizza for the first time and did say the word 'pizza' quite well. I guess it's the only "P word" she can pronounce.

She is now a talker, she loves words such as: Araignée (Spiders for Halloween decorations), journal (Newspaper), cut ( for cup, tasse) On her palette of words, she also added these colors today: blue and purple.

Then on Sunday she went to Chacha's Aloha Birthday Party. Chacha's mom is Hawaian, so the theme was quite exotic. Charlotte is Zoé's mentor. She just turned 3 and uses a walker like Zoé to move around. Zoé is Charlotte's little protegé, and it is so nice to see them get along so well.

The weekend ended with Zoé's first Sukot party where she had fun chasing dogs and baseballs.

On the occupational therapy front we are now starting a brushing therapy, where we try to tickle Zoé's bad foot to make it react and respond so that her foot may curl out instead of folding inward. The brush I use is a surgical brush with very fine bristles. It is quite amazing how it affects Zoé's sensory input. It must trigger an impulse in her muscles that make the foot contract in the opposite direction.

We are also thinking of using the kinesio tape I used on the feet, around her mouth in order for it to open and close in a stronger fashion. We might start that next Monday.

It seems that we always have a trick up our sleeve. If it doesn't hurt, why not give it a try. Zoé is so compliant, that we are lucky to try new techniques and types of therapies. Speaking of which, you may notice how we are playing with flowers and bows in her hair. I have to say, she has not yet adjusted to the no-helmet feel, and bumps her head here and there. We must pay extra care to make sure she doesn't hurt herself.

I guess the helmet was a blessing in disguise, because I wouldn't worry when she took some free falls.

Friday, October 2, 2009

Good Hair Day

Big news about yesterday'S Helmet Apointment: we are trying without the helmet for a month to see whether Zoé's head can change on its own. I was exstatic!!! Yipeeeeeeeeee: barrettes and bow galore. I can go crazy on her hairdoes and don'ts.
It will be interesting to see how she evolves.

It is a new adjustment for Zoé, adjusting to temperature, sensory elements such as the wind in her hair, the sun, wearing soft cotton hats instead of this plastic foamy helmet.

I can remember the first day she wore it, Dad's birthday: April 25th 2008. I was in tears, for as I was alone in NYC, I had to find a way to prop her on a pillow while squeezing it on her little head!

Now, of course, it's like second skin, she wears it on, off, and lately she managed to figure out the Velcro strap.

The first night she wore it, she was 4 months old and she cried every hour. It was the most painful night of them all.

But much water has run under the bridge of experience, and Zoé has gone through so many things, from football coach to astronaut, she can now be a dainty little girl, enjoying her bows and hats.